Monday, November 30, 2009

There are several reasons why I should be fast asleep right now and several reasons why I woke up and can't sleep right now - so I thought I'd use this chance to write a short "wearing no contacts at 2am but this is my only shot at the computer with all the work Robbie's trying to squeeze in" kind of post. (I'll try not to be too heavy on the details, but I also want other albinism families considering this study to get a sense of what it's like.)

We arrived in DC yesterday after a mercifully short flight and quickly discovered we should have packed lighter jackets. Ah, 56 degrees is bliss.

Most of the day was spent waiting for the shuttle, getting to the National Institute of Health where we were screened and I.D.-ed (is that a verb?), and then settling into our new home at the Children's Inn. The campus is beautiful and the Inn is a humbling example of the depths of human kindness and suffering. This is the place where children undergoing treatments for cancer or involved in studies for genetic conditions stay with their families. Everything is free to the families, including shuttle transportation, access to computers and long-distance calls, weekly dinners, family activities, etc. And the facilities offer full use of high-end kitchens, playrooms, game rooms, etc. They try to make it a home away from home, but it's more like a little Utopian community.

Of course, we are constantly reminded of how fragile and often unfair life is as well. During the shuttle ride up here, I met a woman and her family who have been coming here every other year for years because their daughter has early-onset schizophrenia. I tried to imagine how hard it would be to go several years thinking you had the daughter of your dreams...and then one day your teenager is hearing voices and you're faced with the reality that you'll be taking care of her the rest of her life.

Later, as I flipped through a copy of a Parenting magazine left sitting in the communal kitchen, I came across an ad that featured a beaming little boy and the headline: "Now I get TWO cakes every year - one for my birthday, and one for the day my cancer went away!" The contact information for the drug company had been carefully cut out.

At one point, I mentioned the family affected by schizophrenia to Robbie and he nodded. "I have a feeling we're going to leave this week with a lot of perspective," he said.

I couldn't agree more.

One day into our trip, there are already several highlights. For us, they would include things like meeting many great people and seeing the National Mall at night. For Emerson and Fionn, they include a magical day full of endless escalators, elevators, moving walkways, planes, buses, trains, and even some crazy two-story high airport shuttles that looked better suited to driving over the surface of the moon.

I have a huge passion for traveling, but I have to say that despite the many inconveniences of traveling with small children, seeing the experience through their eyes only heightens the excitement. During the shuttle ride to the NIH, for example, the windows were so large that Emerson could see cars driving by on the freeway for the first time in his life. Every car, SUV and truck that passed was another thrilling adventure!

As we rode the metro downtown, I watched his eyes get bigger and bigger the faster the train moved. From his perspective, I realized the tunnel streaming by and the pulse of lights did look a lot like hyper-drive in some space movie. Oh, and don't even get me started on the Christmas lights. At one point he fell asleep in the stroller, only to wake up an hour later on a street filled with lighted trees and cars rushing by. We were walking along in silence and then suddenly his head pops up and he shouts "OH WOW!!!"

Priceless.

Ok, now I should really try to get to sleep. We have a long day of testing ahead of us, so wish us happy children and good hospital food.

Monday, November 16, 2009

This morning I bent over Emerson's sleeping bulk and whispered, "Emerson, we need to get up early this morning." One puffy eye slid open, so I continued. "Guess where we are going? Preschool!!" He was curious but, as usual, took his time to push away the deep weight of sleep. Fionn, meanwhile, shot up and began to crawl around with his characteristic morning energy.

All the way downstairs I sung our new theme song, "Preschool Musical" compliments of Sesame Street. Today we were visiting what will soon be Emerson's new preschool class, in the hopes that a couple hours of introduction will ward off a nuclear meltdown when I drop him off the first day. Considering that lately I can't even go upstairs without causing him to tear his hair out and scream at the top of his lungs, "MAAAAAAAAAMAAAAAA!!!" this seems doubtful. The teacher assured me that if he had several days of tears, he would not be the first, so I'm just praying he will at least settle down quickly.

A few weeks ago, the whole family attended the preschool open house. Robbie doesn't get to be part of school, so the boys and I enjoyed showing him our routines and introducing him to the various teachers. Then we took a tour of the building and learned that the entire school is devoted to Early Intervention and Head Start (which is impressive considering how big it is). Emerson began attending the EI program once a week as an infant since he had a medical diagnosis, then moved on to two times a week in the toddler program, and now half days for three years in the EI preschool class.

Even though we've been attending for three years already, I learned a lot on our tour. There are several gyms, music rooms and a little library where they check out books once a week. Each classroom has a main teacher, two or three parapros, a physical therapist, speech therapist and an occupational therapist. There is also a bathroom in each classroom where the teachers help to potty train them and brush their teeth. They are served both breakfast and lunch (although being vegetarians I will have to pack his meals. But still - someone ELSE has to make him eat it!) We also learned we will get report cards and have to attend parent-teachers' conference.

But the bit that nearly dropped me to the floor - a bus will pull up to our front door to take him to and from school each day! I guess I had imagined preschool to be like the toddler program except a little longer. Instead, I'm realizing we are knee deep in the school years already.

I have to admit I'm a heartless bitch because none of this makes me wistful for Emerson to be a baby again. I don't tear up at the thought of being away from him for hours a day. After being in charge of his every movement 24 hours a day, seven days a week for most of the last few years, the idea that someone else will help me raise him is better than winning the lottery! The only thing that makes me choke up a bit is the image of this tiny person sitting on a giant school bus. Not enough to keep him from riding it mind you, but it's definitely something we need to ease into.

When we arrived for today's warm-up session, Emerson bounded into school with excitement and energy. That is, until we went to his new classroom instead of our usual room. For the first few minutes of group time he pouted and kicked his legs, but by the time we sung "Mat Man," he was starting to thaw.

The idea that Emerson is in a class only with other special needs kids has been a touchy subject in our house, but seeing the classroom in action at least assured me if not Robbie that it is the right place for him. The kids in the class have varying degrees of special needs, most of which aren't obvious to the casual observer, so I think there is plenty Emerson can learn from them. I also love that the classroom makeup looks straight out of a Benetton ad, with every ethnicity (including Pacific Islander) represented. Gotta love Ann Arbor.

During our visit, I made several mental notes about things to bring up at the IEP meeting this Friday (i.e. he needs to sit at the front so he can see, he needs a parapro to keep an eye on him during outside time so he doesn't tumble off a wayward step, etc.) and I made notes for myself (i.e. always send a thick coat, buy a bento box for lunch, etc.). So now I'm feeling much more prepared and ready to face the adventures ahead.

In the meantime, I informed all the teachers that Robbie was going to make his famous chocolate chip cookies for our IEP meeting, so hopefully that will win us some brownie points as we enter into negotiations. I expect the meeting to go smoothly, but there are a couple of issues (like getting fluorescent bulb jackets for all the classroom lights to cut down on eye strain) that will take some hashing out.

Now I just need to inform Robbie that he is going to bake his famous chocolate chip cookies...

Tuesday, November 10, 2009

The other day we were in the grocery store - Robbie had Fionn strapped to his chest and I had Emerson in his cart. Robbie, of course, spotted someone we knew in checkout and wandered over to talk to them while I helped some frazzled woman track down canned chilies.

Apparently while Robbie was talking to our friends, some strange older woman interrupted him to start asking questions about Fionn's coloring. As is often the case, as soon as one person dares to be nosy, it opens to floodgates for everyone else in earshot. Robbie tried to make his way back to me, but this woman and a store worker wandered right along with him. I inwardly groaned as I saw them come around the end of the aisle - the woman was staring at Fionn by now and muttering, "That's going to be interesting watching them grow up." Then she spotted Emerson in my cart and her eyes got even wider. We fielded more questions from her and she did more muttering. "It's definitely going to be interesting. Veeeery interesting."

As she left, the store worker started in. When he asked if we have to buy a lot of sunscreen, I took the opportunity. "We sure do. In fact, that reminds me - we are all out. Thanks!" And off we went to the sunscreen aisle (we were in fact out).

When we left the store, I started complaining about the crazies, especially the woman. "Why the hell does she need to tell us it's going to be interesting?' I should have said, 'In case you haven't noticed, we're already three years and two kids into it. We KNOW it's interesting!"

Robbie snorted. "No, what we should have said is, 'Yeah, it will be interesting. I bet all kinds of crazy people are going to interrupt us to ask stupid questions. What do you think we should do if that happens?'"

Friday, November 6, 2009

For those of you who don't wish to torture yourselves by going through the hundreds of new pictures we just posted on Flikr, here is a slightly abridged (albeit long enough to still be embarrassing) photo post/catch up post:

The best time of year in Michigan is Fall. And the best activity in Fall is the Cider Mill. You basically gorge yourself on homemade cider and doughnuts, pick a few apples or pumpkins yourself to feel more wholesome, and try not to spend all your money on the myriad of activities meant to lure in families with young children. This year, we took along our friend's baby girl, Jane, so they could catch up on housework. I have to admit, it was fun pretending we had twins plus a toddler - although I was disappointed at the lack of reaction among the general public. Apparently, having two kids with white hair garners a lot more attention than having twins and a toddler two years apart. Hmm.

I have to say, seeing Robbie with Jane made my ovaries ache. Sigh.

Emerson quickly took to the idea of thumping pumpkins to test how good they are. So we had to pat ALL of them.

The strangest sight was seeing them "stock" the pumpkin patch. Yes - we drove on a wagon out to this field that used to be a pumpkin patch, but had long ago been picked over. As we are staring at the "planted" pumpkins, a truck pulls up and workers start unloading more pumpkins. So people crowd around to get one, seemingly unconcerned with the absurdity of this ruse. Technically our pumpkin was no different, but just on principle I refused to get one directly off the truck.

Next stop was the farm petting zoo, full of animals that had overdosed on prozac and looked long gone to the world. The woman at the front refused to charge us for the two babies since she assumed only the toddler would enjoy it.

She had it backwards.

Emerson fails to grasp the concept of sticking your head through the wooden display for a picture.

He also fails to understand why we are making him stand on a large haystack.

A few weeks ago, Emerson was in a family wedding in his first-ever ring bearer gig. I was the officiant, but let me tell you - being the mom of the ring bearer was much more stressful. The first step was getting fitted for his tux - and discovering the magic of mirrors.

Incidentally, they took every single measurement possible, then turned and asked me, "What size does he wear?" When I answered 3T, they turned and pulled out a 3T tux, saying, "Here you go. We don't rent this one, so you need to buy it for $70." My initial reaction was, "Why the hell did you make him sit through all the measurements if it's based on standard sizing?" My second thought was, "Screw you Men's Wearhouse, I'm buying this tux second hand." The next day I found the exact same one at a resell shop complete with vest and tie for $20. SO there.

My handsome men before the wedding rehearsal. These rare moments when I can force them into complementary sweater vests almost make it ok that I don't have a daughter. Almost.

Emerson did...poorly...at the wedding rehearsal the night before, so we came prepared with gummy bears to bribe him down the aisle. He ate all 75+ of them in the hour before the wedding started. Then we had to hide the empty bucket that he refused to relinquish under the ring pillow.

The plan was for Emerson to hold the flower girl's hand and be dragged down the aisle. Unfortunately, we forgot to take into account her need to use both hands to throw flower petals as she walked. So Robbie sent him down on his own. He walked a few steps, looked around in confusion at everyone staring at him, Robbie gently pushed him down the aisle a few more feet, and the cycle repeated. Needless to say, it took a while to get him all the way down. Ah, memories.

Next to his dapper brother, Fionn looks a little like the crazy, drunk uncle who is always embarrassing himself at family parties.

During dinner, cousin Ricky leans over to taunt Emerson, "Hey, can you make this face?"

I nearly reply, "Don't challenge Emerson to a crazy eye contest because you will go DOWN" But then I think better of it.

(Yes, I'm aware that I'm a horrible person.)

Fionn literally danced his socks off.

Watching the mother-son dance, I had one of those stereotypical moments of tearing up with the realization that someday I'll be taking the dance floor with my own sons. Sigh.

The ever-cool man, Emerson starts scouting for the best after-parties.

At the end of the month, we had to make a mini trip to Chicago so I could complete my interview with the Regional Subcommittee on Candidacy. This is a major hurdle where they decide if you have enough of what it takes to be a minister and recommend that you either continue on or give up now. But they state it a lot better than that. I did ok and passed the interview, but a combination of having a sick stomach (no I'm not pregnant, so don't email me all in a tizzy) and having some recent doubts about my ministry path made this a challenging trip. With all this weighing heavy on my mind (and stomach) the morning of the interview, we decide the best medicine would be to eat greasy diner food in Hyde Park.

Hyde Park from a 3-year-old's perspective.

After lunch, we spent the afternoon exploring the Museum of Science and Industry. I prayed that my sour stomach would clear up before my 5pm interview. It did not.

Emerson, being Emerson, loved the endless ramps and the water ball pit.

Fionn, being Fionn, enjoyed just about anything that involved getting out of the sling.

And I finally got to live out my dreams of going to space.

Emerson's first trick-or-treating experience was the downtown Halloween parade the day before. By the time we walked down there, he was passed out - but I was determined to get some trick-or-treating in before the parade ended in an hour. So I shook my kid awake, bribed him with the promise of candy and dragged all three of us through the rain to get it done. My violent illness and squirming kids be damned - we were going to have FUN! And despite my insane drive to force my children into enjoying themselves, they actually did have fun. The moment people started putting candy into his bucket, Emerson was wide awake and babbling an excited stream of chatter that included the word "wow" and "candy" several times. It was priceless.

Fionn's First Birthday/Halloween Party. The number of babies in attendance and resulting chaos was a sight to be seen.

The moment he saw the cupcake, he burst into tears because we weren't giving it to him fast enough. Needless to say, he did not share his brother's aversion to digging in and getting messy.

Notice the single tear for dramatic effect.

Six teeth and a tiny stomach notwithstanding, Fionn devours every last crumb.

Despite an entire day of partying, we still have a night of trick-or-treating ahead of us. Emerson is thrilled that the generosity continues, although I will spend the next few days trying to convince him that we can't go outside every night and collect candy from our neighbors.

After nearly two hours of trick-or-treating, Emerson falls into a deep coma.

I mentioned several posts ago that I was going to post the new picture schedule I created for Emerson - so here I am finally getting to it! These are often used to help kids who have trouble making transitions between activities, or for kids like Emerson who don't necessarily have trouble with transitions, but who dislike routines and fight it every step of the way. For instance, trying to apply sunscreen every morning is a lot like trying to wrestle a squealing, greased pig. (Or something like that - I'm not up on my farm similes.) These pictures make it more of a game to get through it...and letting him watch cartoons during the process doesn't hurt either. But more on that later.

Here is his morning schedule (the one we use the most often since the night often just...happens...lately).

When it's time for a new activity, we move it to the front (I purchased these awesome velcro dots to make this work) and I repeat what the picture stands for. I.E. "Now it's time for sunscreen!" When the activity is finished, he gets to remove the picture and put it in the pocket folder (see last image).

Here is our night schedule:

This folder hasn't been used as much since I often forget to pull it out, but it's full of his favorite activities. I put two dots on the front so he can either pick between two favorite activities as a reward for something done well, or we can use it for the "First, then" method. This is when you take a hated activity (say...sunscreen) and put it on the first dot. Then the preferred activity (say bubbles or bike riding) goes on the second dot. The idea is to explain, "First we will do sunscreen, then bubbles." Sometimes this helps. Sometimes it doesn't.

Putting the picture in the folder seems like a lame reward, but kids get excited about strange things. The one thing I will say is that the schedules will lose their novelty for both parents and kids quickly. I find myself using them for a few days, then not for a few, then back to using them. It depends on how much your child craves strict routine (we still generally follow the routine, we just don't always use the pictures to help us, but some kids get very upset if things are not just so every day). I'm also inherently lazy.

After a trip, a mystery illness, a wedding, a birthday party, some major life decisions and a computer virus that completely shut me down, I'm FINALLY back to the keyboard. Hopefully today I will get a chance to finish one of the many half-written posts in my draft box, but in the meantime, I uploaded all our new pictures from the past couple months in Flikr if you're so inclined.